Assessing the Quality of Services for Children with Autism Spectrum Disorders in the Northwestern Iran

Extended Abstract

Background
Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by problems in social and behavioral interactions, stereotyped and repetitive interests, and movements. According to World Health Organization reports in 2013, it was determined that, on average, one out of 160 children had ASD. The prevalence of this disorder in Iran was 6.26 per 10,000. The prevalence of ASD has been increasing over the years. Although the quality of ASD services is one of the most critical determinants of the effectiveness of therapeutic and rehabilitation interventions, it has not been investigated in Iran. This study, therefore, aimed to assess the quality of ASD services in East Azerbaijan and Ardabil provinces.
Methods
This descriptive-analytical study was conducted in 2017 to investigate the parents of children aged 2-14 suffering from ASD. The research environment included outpatient centers providing educational and care services to children with ASD in East Azerbaijan and Ardabil provinces. The census method was adopted for sampling. At the time of conducting this study, there were 600 confirmed cases of ASD based on the Tabriz University of Medical Sciences ASD registry system, of which less than 300 were from centers providing services to children with ASD in the East Azerbaijan and Ardabil provinces. Parents of children who had a definite diagnosis record in one of the medical/rehabilitation centers and had received services from ASD rehabilitation or treatment centers at least once during the earlier six months were included in the study. The questionnaire included four sections inquiring about the child's demographic information, diagnostic information, child behavioral symptoms, and information related to the quality of services in the form of 15 questions, which were categorized into four areas of participation in the decision, coordination of care, continuity of care, and timeliness. Finally, the total score for all questions was reported in a normalized form of the 0-100 range. CVR and CVI were used to study content validity quantitatively. After a survey of experts to confirm the validity of the questionnaire, the content validity of two questions were not confirmed and were removed from the questionnaire (questions including concerns about dealing with the child's behavioral or psychological problems and concerns about the consumption of drugs or alcohol by a family member) with an average score of 0.88. Questionnaire validity was confirmed by CVR=0.81 and CVI=0.81. Furthermore, the reliability of the questionnaire was confirmed with Cronbach's alpha of 0.92. Descriptive statistics were used for demographic information. The Chi-square test was used to determine the relationship between demographic variables, behavioral symptoms, and diagnostic information with service quality. SPSS-19 software was used to analyze data, and the significance level of the statistical tests was considered 0.05.
Results
According to our study findings, 152 (76.7%) of the children were male. The average age of the children was five years and four months. Seven participants (3.5%) had no insurance coverage, and 28 participants (14%) obtained free insurance coverage from the Iranian health insurance system. Participation in decisions, with an average of 66.84 (41.21), had the highest score among quality dimensions. In addition, the total service quality score was 61.69 (30.32), indicating the average quality of services provided to children with ASD from the parent's perspective. From the perspective of parents, the score of service quality for children whose fathers were employees was 68.98 (28.89), while that for children whose fathers were workers was 51.08 (33.01); this difference was statistically significant (P-value=0.006). Examination of the service quality score based on the age of the participating children revealed that the dimensions of participation in decision-making (R=0.182), coordination of care (R=0.168), and overall quality (R=0.215) had a positive and significant relationship with the child's age (P<0.05). For children with one, two, or three verbal problems, the service quality scores were decreased, respectively. The difference in service quality scores based on children's verbal problems was not statistically significant. Even though the service quality score regularly decreased with an increase in the interval between the initiations of treatment after the definitive diagnosis, this difference was not statistically significant.
Conclusion
Our study was the first, in Iran, to assess the quality of services provided to children with ASD. Based on the experience of the service recipients, the service quality was evaluated in four dimensions as participation in decisions, coordination of care, continuity of care, and timeliness in two provinces of East Azerbaijan and Ardabil. The results indicated that the quality of service had a high average score, but the scores differed significantly from the maximum score. This may have been due to the fact that the services were provided by private organizations and centers related to welfare, and no specific organization on behalf of the Ministry of Health evaluated these centers. Therefore, it was suggested that these services should be provided under the supervision of the Ministry of Health, and criteria for the evaluation of such centers and related services should be included in the accreditation program of hospitals or universities of medical sciences.